Video Presentation at FCM Conference

Monday, June 25, 2012

Hello All,I am so pleased to be able to share our beautiful video that Robin Boone Hudson made of our ADORABLE PMG children and our oldest member, Glen Schallman, who was diagnosed at 43!

The FCM Convention was interesting. Unfortunately, there was very little information shared specific to PMG. Mainly the only time it was mentioned was in the context of PMG with Microcephaly which is usually a specific subtype.

I did get to speak with Dr. Dobyns about his thoughts as to whether he felt that the statistic of 1 in 2500 births was accurate for PMG. He said he felt it was at LEAST 10 times that number! He also said that he feels that CMV is the cause in at least 20-30% of PMG cases!

What does that mean?

TWO THINGS:

1) He suggests you get your physician’s to request your child’s heel stick blood spot card (see PMGawareness.org RESOURCES for how to find your state’s policy on heel stick cards) and have your doctor have it tested for CMV. It’s really the only way to know if your child had congenital CMV at birth. We NEED this data to support the need for mandatory testing as well as treatment!

2) We need you ALL to fight for mandatory CMV education, testing, and TREATMENT for pregnant women with active infection during pregnancy. We can ALL make a difference here!

In addition, there have been a lot more subtypes of PMG identified. The more we all participate in research, the quicker we can identify causes and eventually treatments and a CURE.

So let’s ALL try and participate in research programs! You can find more information on research programs at our RESOURCES tab at www.pmgawareness.org.

There weren’t a lot of PMG families at the convention, but we sure did enjoy having the opportunity to meet with them. It was incredible to share some time with you all.

Lastly, we are very interested in determining the interest in having a PMG Conference or Convention sometime in the future. What do you all think??

Thank you for all your participation in the Family Survey and sending in the photos of your kids. We hope you will gain something from the PowerPoint and enjoy the fabulous video presentation.

Testimonials

The PMG Awareness website has been incredibly helpful for us. At the time of our daughters diagnosis, we were overwhelmed and devastated. Yet discovering this site not only helped us to educate ourselves further about Polymicrogyria, but it also opened up a whole new community of support and helpful resources. We are so grateful for this incredible hub of information, delivered in an educational and compassionate way that families all over the world can relate to.

The PMG Awareness website has been incredibly helpful for us. At the time of our daughters diagnosis, we were overwhelmed and devastated. Yet discovering this site not only helped us to educate ourselves further about Polymicrogyria, but it also opened up a whole new community of support and helpful resources. We are so grateful for this incredible hub of information, delivered in an educational and compassionate way that families all over the world can relate to.